I bet some of you have seen this recent article at Wired.com where Ari Ne'eman is interviewed by Steve Silberman about his recent appointment to the National Council on Disability:
Exclusive: First Autistic Presidential Appointee Speaks Out
Considering the biased nature of some of the questions, not a lot of compelling answers resulted that differed from what has already been said by those on his side. I would have liked if he was asked about past achievements in advocacy of his that would justify his recent appointment, and if there were some follow up questions put to him based upon his answers. But what lack of bias can be expected of Wired, which is heavily generated by and viewed by super smart people in tech professions.
"Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure." Here we go again, as if quality of life has nothing to do with cure, particularly the mental capacity that often is lacking without a cure which lowers quality of life. And who is he to call such questions narrow? He can't resist continuing to blame the lack of help for autistics on the efforts toward cure.
"Groups like Autism Speaks have taken tremendous amounts of money out of local communities, but haven’t included the people they claim to be serving in their decision-making structure." What a lie ignoring the appointment of John Elder Robison to their scientific advisory board. These tactics are getting pathetic and cowardly now.
Then he deploys some cheap political tactic: "Very few of us wake up in the morning and think, “Have they developed a proper mouse model for autism yet?” Instead, autistic people and their parents worry about finding the educational and support services that they need." Trying to get others to see only short-term immediate possibilities and affairs and ignore underlying concepts and further-reaching goals, to get them to focus on scrambling for the few crumbs that are available to pacify them, is what I see here. Regardless of the likely limitations of results of mouse models, it is stunning to see this said by someone who arose from the aspie elite, the same bunch that has spent years gleefully discussing at times how neurological research could explain some of the neurological "gifts" (I call them unfair privileges or monopolies) held by well-off aspies and high-functioning autistics. I've sensed this attitude of the cure underminers for a while, that of leaving the complicated and deeper matters to the successful ones on the spectrum while insisting that the unfortunate focus on the immediate choices and options available to them and on petty, sappy, insignificant aspects of dealing with society.
Then when asked a question about how the technologically skilled, who make up much of the readers of Wired, could help autistics, I couldn't expect anything phonier from Ne'eman than what he came up with:
"If we put one-tenth of the money currently spent on looking for causes and cures into developing technologies that enable autistic people with speech challenges to communicate more easily — so-called augmentative and alternative communication [AAC] — we’d have a vast improvement in the quality of life for autistic people and their family members."
First of all, speech isn't simply the only thing that's involved in communicative deficiencies, but language capacity often also. Externally constructed devices can't interpret thoughts of a mind and translate them into language for a device to display as output. What could a machine do to interpret impaired language usage of someone into understandable statements, that an ordinary observing person couldn't? I think such wacky ideas for inventions would go way over the 10% of the money currently budgeted to causes and cures, and with very fruitless results. Just what we need, another racket that likely could end up as the facilitated communication hoax/scam did. I wonder if it's too much to ask for these intellectually privileged technology experts to devise products that would cure, and thereby increase the mental functioning of others who started out with so much less aptitude.
Then he continues on the possibilities of technology:
"Finally, there should be websites or apps that enable disabled people to rate their service providers and record their experiences, like the websites that already exist for college students to rate their professors." That would be a great idea. The entities that are supposed to provide these services contain a lot of the problems with service implementation for autistics, and making them accountable would help a lot. I think this would be a great idea for anyone who has had to deal with an inefficient, weakly operated government bureaucracy.
"We’ve barely begun to tap the potential of handheld networked devices to assist with the kinds of deficits in executive functioning and life skills that many of us on the spectrum face. Mobile devices and apps could be very helpful in improving prospects for employment and education"
Falling for this exaggeration seems to me to come from being mesmerized by the power of technologies, while consequently losing sight of the skills necessary to come up with a beneficial task for the technology and consequently to understand the tasks being carried out by the technology, and the skills necessary to mentally understand the results. I think such devices could only have minor benefits for some routine tasks, but technologies, which themselves are products of intellectual tasks, don't transfer functional capacity to the minds of those who use them.
Then when his high-functioning status is mentioned, he comes up with an interestingly deceptive response:
"I recognize that I’m fortunate in many respects and am able to do things that some other autistic people can’t do. But I would also point out that these things didn’t — and don’t now — come easily to me. I’ve been fortunate to be able to count on the inclusive culture of the broader disability-rights movement to help support me."
There's no way to convince many sane individuals of the claim that those with such high aptitude get their success through lots of hard work. Such amounts of success and accomplishment repeatedly, do not come through sheer effort and determination. It's well known that aptitude associated accomplishments are not only made easier but also possible by having strong mental functioning. Inclusive culture or whatever doesn't have squat to do with it.
Then he goes on with a bunch of irrelevant and abstract identity politics tied to autism as usual to distract from the reality of the problems at hand. I'm appalled at his solely positive description of Autreat, where he basically describes it as if it's empowering, while neglecting to mention the exclusionary and undemocratic nature of it, which would make his praises of it untrue for some on the spectrum.
It seems that he and the other anti-cure, empty solution pushers, who are getting so much of the media attention on the politics of autism, aren't very worried about explaining why they should advocate against certain things despite opposing views. Not only is there dismissing of the rejections of their views, but outright ignoring of why others don't agree based on deeper and fundamental concepts. I guess the people in charge of some of the large entities that Ne'eman and others like him are involved with, aren't that concerned about being held accountable based on their performance, and get those like Ne'eman involved to keep up the image of a farce that would be a way of explaining the shitty results that are often intended for by those in charge. I hope that the media coverage starting to be gained by Jonathan Mitchell and others on the side of reason and progress continues to grow. I think it's the only realistic chance to counter the tide of backward ideas.